EDS and Colostomy: Seeking Advice and Doctor Recommendations

Hi all.  Wondering if anyone has had a colostomy due to complications from EDS which is a connective tissue disease.  Doctors now believe my bowel perforated due to EDS - rather than divertic.  This will likely mean my situation is much worse as another perforation could occur at any time.  also need medical expertise so if there is a doctor out there who is familiar with my disease, it would be great.  I live in Canada.

Hello Daisy Mae.  Thank you for your post. I had never heard of this condition before.  However, I Googled it and came up with a very informative website: http://www.ehlers-danlos.org/index.php/ehlers-danlos-syndrome-mainmenu-17 . I feel sure that such an organisation would have contacts who specialise in this around the world.  It might be worth a try to contact them.

Best wishes. Bill

Tnx Bill for replying .  Yes, I am aware of that org, and others.  Very good info but no one on these networks is candid about having had a colostomy.  Am still hoping someone with EDS on this blog will find me.  I remain hopeful.  Tnx again for looking up that up - it means one more person knows about EDS - a disease that is more common than most people realize.